Community for the chronically ill

Lupus

The Beginning of Life with Lupus

I live in Florida, the Sunshine State, where it just so happens that the sun has become my worst enemy. At the age of twenty-six, I was diagnosed with systemic lupus erythematosus (SLE). It’s been a roller coaster experience.

It remains one of the hardest things I’ve ever been through. My symptoms began around the end of October 2015, when one day I randomly woke up with a big rash on my face. I would go to work like everything was normal and everyone would ask, but I just kept saying it was allergies. Because that’s what we all thought. Allergies.

One Sunday morning I’ll never forget, I went to work like I normally would. But this time, I started feeling so bad and felt my face slowly swell up. I called my mom and sent her a picture. She said, “You have to go to the hospital.” And so I did. The first time they put me on an IV and allergy meds. After that visit, I had to see an allergist. So I went and she did a million and one painful and uncomfortable allergy tests. She told me, “You have allergies, but what you are going through right now isn’t an allergic reaction.” She suggested I see a rheumatologist. But before I could see the rheumatologist, I ended up in the hospital again because my face swelled up a second time.

My Harsh Reality

This time a nurse kept insisting it was Lupus. And that was the first time I had ever heard of this disease. After that, I finally saw the rheumatologist. They did a whole lot of tests and took lots of blood and urine. Afterwards, I also saw a dermatologist which double confirmed it by doing a skin biopsy. I had SLE. It hasn’t spread out, but I do feel a lot of fatigue and I am constantly getting the butterfly rash and just rashes in general.

The “Fun” Stuff

So all in all, I went to the hospital two times before I officially got diagnosed with SLE. After I got diagnosed, my hair started falling out and it crushed me. I was so scared and so self-conscious and it had me so emotional. I also started my treatment of Prednisone and Plaquenil. And now most recently, I started on Imuran. Scratch that, I tried it for about a week and it sent me to the hospital. I thought I was going to have a heart attack! No more Imuran for me.

The side effects have me going crazy on a daily basis. One day I’m good, the next I feel bad, but I guess that’s what happens when you’re a Lupie. The major things I’ve been struggling with lately are the weight gain and losing my hair again. I try so hard to be strong and keep my faith.

But I’m alive and I am thankful for that. Now I take medicine every day and I go to my doctor’s visits. All the while, I am still trying to get used to all the new symptoms I experience.

I suffer from minor anxiety as well as minor depression. I don’t take meds for them because I try to control those icky feelings myself. I’ve always felt that I caused myself to have lupus. In 2012, I suffered a traumatic experience where I tried to commit suicide due to feeling overwhelmed by life. I let myself fall into the deepest hole I’ve ever fallen into and I vowed to never, ever again take antidepressants.

The Recent Years

These past two years have been absolutely crazy. I’ve gone to the hospital about four times. And this lupus life has managed to change not only my life but my relationship, too. See, I’ve been with my boyfriend for seven years and I’ve been living with him for five. My diagnosis has taken a huge toll on him, too. I’ve changed so much since he met me.

It might sound ugly, but I always say that I feel like the old me died and I was reborn as the me with lupus. I find myself to still be in denial. And maybe, just maybe, one day I’ll be able to say I’m okay with this and play the card I was dealt. As of yet, I’m not completely ready. I work full time and I do everything I’d normally do. Except it’s hard for me to do little things like clean my house and do laundry. Thankfully my boyfriend helps me with it and I just hope this keeps making us stronger as a couple.

Daily Life

I deal with a lot of fatigue on a daily basis and the famous butterfly rash. One of the main things I deal with that I’m self-conscious about is I’ve gained over 40 pounds since I got diagnosed and started taking prednisone. I’ve also already experienced shingles (which was the worst pain I’ve ever experienced last year on Christmas Eve). Now I currently have a stress fracture in my right foot and am condemned to wear a boot for 6-8 weeks.

Thankful

Having lupus makes me thankful for a lot of things.

I am thankful for the internet!

I am thankful I have the support of my family and friends who help me get through the tough times.

I am thankful I came across an online support group so I can learn more about lupus and how to deal with it. It’s nice to talk to people who know exactly what you’re going through and not have to worry about being judged or looked at differently.

I honestly don’t know what I would have done if The Unchargeables didn’t exist. It has helped me so much. There’s so many great people on here who, without knowing me in person, offer lots of emotional support along with awesome advice. It’s a place where you can come together with people who completely get it and a place where you can come vent and everyone will listen.

Thank you for letting me share my story that I’ve never really opened up about before.

About the Author:

Cynthia is 28 years old and was born and raised in Miami, Florida, to parents from Nicaragua. She works full time and lives with her boyfriend. She was diagnosed with lupus (SLE) on January 22, 2016 following the appearance of a series of red rashes on her face. Now she just tries to take it day by day, though she finds that some days are easier than others.

I’m on a deserted island in a sea of deserted islands; my chronic condition is the sea that separates me from others. We all have made shift rafts that allow us to visit one another from time to time, but we always end up back on our spot of ground. Sometimes I visit someone with Lupus, or Fibromyalgia, or even someone who lives with the same condition I have: daily chronic migraine and I feel, for too brief moments, that someone else understands. I don’t have to educate or feel that niggling obligation to prove that, indeed, I face it every day; that I’m not faking it.

I’ve had a daily chronic migraine for eleven years. Although the chronic migraine condition is defined as lasting more than 15 days per month, I experience some level of pain every waking minute of every day. So do most of the people I know who have the same condition.

I’m sure I started my search for relief like many:

I wanted the magic pill. I had unquestioning faith in the medical community and thought that, surely, there was some way to fix this thing that had turned my world upside down. Then I discovered that medicine is as much art as science and that my condition, like so many, eludes effective long-term treatment.

So I turned to alternate therapies.

Everything from acupuncture to massage. From the power of positive thinking to elimination diets. From consistent sleep to exercise. From trigger point injections to radio nerve ablation. They, like the medications I’ve tried from western medicine, didn’t provide long-term effective relief.

It’s easy to get disheartened.

Even those of us who manage to hold onto hope on a regular basis, spend some time in the clutches of despair, wondering if we can keep going through the long days that will inevitably follow. So what does work? How do we move forward? How we do more than exist? How do we live?

Although there’s no magic pill or wand here either, I’ve found some practices that help and that, unlike some medications, continue to provide some benefit no matter the length of time I practice them.

Manage Your Health

My health is solely my responsibility.

I only see doctors who will work with me. A doctor who will partner with me, one who explains their suggestions and who listens to and answers my questions, one who will graciously accept me declining specific treatments for reasons I explain is the cornerstone of me effectively managing my health. Doctors that unilaterally make decisions regarding my medications, procedures, and treatment are immediately fired. Anything I put into my body and anything that is done to my body is ultimately my decision.

I research and read and learn.

I bring possibilities to my doctor as much as they present possible treatments to me. And I inform them of everything I try and its efficacy or lack thereof.

I am my own guinea pig.

There is little I won’t try if it’s low risk and, with the knowledge and help of my doctor, I can research and implement on my own. I’ve been a vegan and a vegetarian. I’ve practiced yoga. I’ve removed processed sugars from my diet. I’ve researched hormones, their impacts and ways to regulate them through diet and exercise, and implemented those dietary and exercise ideas. And I’ll continue to see what might work. Ensure that any changes you make or therapies you try is under the supervision of a doctor! Many practices can have effects on current medications and other therapies you may be undergoing as well as present health risks that only your doctor can help you understand.

Get An Extra Spoon

No matter what our circumstances: spouse, parent, employee, single, friend, lover, there are things that need to be done in life. Grocery shopping, or ordering food when cooking is entirely out of the question, but eating is possible. Cleaning so that there are times when we can actually see the floor. Laundry, bathing, brushing teeth. These things sound easy. But when getting out of bed is a feat of extraordinary fortitude, the multitude of tasks after that are simply impossible.
I used to spend my “good” days attending to all the things that don’t get done regularly, followed by falling exhausted into bed with hopes that tomorrow might bring another “good” day. Soon I found that all of my “good” days were spent doing things that had to be done. Certainly, it felt good that a few tasks were checked off the list, but the list never ends. Add to that exhaustion that inevitably followed the frenzy of activity. My cup was always empty; my spoons spent on either feeling awful or doing what had to be done.

Those of us managing a chronic condition feel like we need to do it all, and in a fraction of the time, it takes those without our particular challenges. I’ll let you in on an enormous secret: we don’t. We will not be bad spouses if we don’t get the house cleaned. We will not be bad employees if we miss work on occasion. We will not be bad friends if we can’t make a birthday party. Most importantly, we are not bad people because we aren’t able to function the way many others do.

It’s hard to believe; to convince ourselves that, indeed, we are worthy; that we are enough. We have those angels perched on our shoulders shaking their fingers at us. Well tell that angel something from me: go pound sand. Even better, tell that winged creature yourself. Really get into it! Get creative. Make up horrible names for the beastie. It feels fantastic.
You have permission to care for yourself. We can’t continue to spend spoons on the incessant “shoulds” of the world. Those actually cost more than one spoon. Try it out. Keep hold of that spoon for the day. And keep hold of another one the next day. Chose a different spoon one day for a week and see how you feel at the end of the week. Seriously, make a note of how you feel on Friday night or Sunday night or whatever night works. Then take that entire week and save spoons. Reassess at the end of seven days. Scan your body. Scan your mind. Only concentrate on that. See how you feel. If it works for you, keep it up.

Meditation

I don’t mean this in the spiritual or prayer sense, but if that works for you, by all means, run with it. It makes more sense to me as a method to train the brain. In managing my condition, I’ve tried everything. Medication, exercise, supplements, nerve blocks, Botox, trigger point injections, and more dietary changes than I can count. And still, meditation is the single most effective thing I have found.I started it because I’d read studies that showed it helped with

I started it because I’d read studies that showed it helped with chronic pain. And, as I’ve repeated said, I’d stand on my head and sing The Star Spangled Banner if I thought that would provide a modicum of relief.

I, like many, get tied up in horrible thoughts. About how worthless I am because of the condition, how I’m incapable of living a fulfilled life, how awful a parent I am, how terrible a spouse, how I’m not capable of working consistently on anything, how I just can’t take it anymore. And it goes on. So, on top of pain (and nausea, and light/sound sensitivity, and cognitive issues), I can find myself panicky and miserable.But, this is exactly what brain training helps with. If our thoughts run away with us, it’s our brain that’s at the wheel.

But, this is exactly what brain training helps with. If our thoughts run away with us, it’s our brain that’s at the wheel. This practice has offered up the ability to allow me to be human, and sometimes less than human. I can let myself, if not fold the towel and place it aside, throw it in and recognize the days that I need more self-care than to care for others. And it actually helps me think through ways to make that happen. It allows me to offer myself forgiveness and compassion for my weak moments, and to ask for help without self-recrimination. In a nutshell, it has offered me more freedom than I felt even before the daily chronic migraine struck.

It’s not perfect, and it took some practicing before I started to manifest forgiveness and compassion for myself. I still feel the pain (and nausea and light/sound sensitivity, and cognitive issues). But I have my life back. I can live joyfully when conditions are low enough without the thought that it will be short lived. I’ve traded in panic for peace, and terror for calm. Even in the midst of awful days, I’m still me, and I can actually see that there may be a good day on the horizon. It has allowed me to leave mere existence behind and live life more fully than I thought possible.

Kimberlee Maclean is a fellow Unchargeable who suffers from Chronic Migraine.

Dysautonomia (“Dys” from the Greek word for bad or malformed and “Autonomia” referring to the body’s autonomic nervous system (ANS)) is an umbrella term referring to a failure of the sympathetic or parasympathetic parts of the autonomic nervous system (ANS). It may also refer to an overactive ANS. The ANS is what controls the involuntary functions of the body. It affects the nerves, which carry information from the brain to the rest of the automatic nervous system, including the heart, blood vessels, bladder and sweat glands.

Dysautonomia can cause problems within the heart, affecting heart rate, body temperature and blood pressure. It is often a secondary symptom of other chronic illnesses. Some dysautonomia conditions are reversible however, many conditions, such as co-morbidity with Parkinson’s disease are not. It may affect a local area of the body, or be more generalized throughout the body.

Dysautonomia affects over one million Americans and close to 70 million people worldwide. It affects both men and women. Despite its prevalence, dysautonomia may take a long time to be diagnosed due to the lack of awareness among patients and physicians. It is an “invisible” disease, as symptoms occur within the body. Often symptoms are more observable after the patient is exposed to heat, anxiety, or physical activity.

Causes

Dysautonomia can occur due to injury of the ANS from another disorder, and may be genetic. It may also be caused by exposure to toxic chemicals, trauma or a viral illness. Some of the diseases that may cause dysautonomia are:

Symptoms and Diagnosis

To diagnose dysautonomia, the physician will test the functionality of the ANS, especially on the organs that are affected. Tests will likely include measuring blood pressure and heart rate in several positions, using a tilt table, sweat testing, and deep breathing.
Common symptoms of dysautonomia are fatigue, impotence in men, faintness upon standing, rapid pulse rate with exertion, weakness, dry mouth, cognitive impairment, orthostatic hypotension, urinary incontinence, and constipation.

Treatment and Management

While there is generally no cure for dysautonomia, treatment of the co-morbid illnesses may be beneficial in reduction of the symptoms. Medications may be used to treat the individual symptoms of dysautonomia, such as controlling blood glucose and using medication to treat acid-reflux, or giving injections of botulinum toxin type A to manage hyperhidrosis (excessive sweating). Other management measures can include elevating the head of the bed, and adding a high-salt diet and other lifestyle changes. Taking cooler showers, standing slowly from a sitting position and other postural changes may help.

Prognosis

Depending on the cause of dysautonomia in the individual, prognosis can vary.

The term ‘lupus’ comes from the Latin word for wolf – the facial rashes associated with the condition were once thought to resemble a wolf’s bite.

The common term ‘lupus’ (lupus erythematosus) actually covers a family of conditions classified as autoimmune diseases. In autoimmune diseases the body’s own self-defence mechanisms (antibodies) become ‘hyperactive’ and attack normal healthy tissues within the body.

Autoimmune diseases can affect many parts of the body, including joints, blood cells, the heart, and other major organs, including the skin.

Among the lupus family, systemic lupus erythematosus is the most common and severe form of the condition.

Classification

lupus can manifest itself as both a ‘systemic’ disease (i.e. one that affects multiple organs of the body within one patient) or in a ‘cutaneous’ form (affecting only those organs of the integumentary system, including hair, skin and nails).

Although there are numerous sub-categories of lupus, the disease can be broken down into four main ‘types’:

Signs and Symptoms

The symptoms of lupus can vary from patient to patient. They may last for some time, or come and go over a period of time. Joint pain and swelling are among the most common symptoms and are experienced by almost all sufferers. Commonly, arthritis will affect the joints, including fingers, hands, wrists and knees.

Another common symptom of lupus is photosensitivity (sensitivity to light) although at this time the exact causal relationship between lupus and photosensitivity has yet to be established and research is continuing in this area. Suspected causes of photosensitivity in sufferers of lupus include:

Genetics

It is widely believed by experts that lupus can be influenced by multiple genes. Lupus is commonly influenced by ‘gene plymorphisms’ and to date 30 of these have been linked to the disorder. However, research is still very active in this area, and little is known about some of these connections at the moment.

Lupus can occur at any age, but most commonly it develops between the ages of 15 and 44. Those who develop lupus at a younger age are more likely to suffer alopecia (hair loss) skin rash and mucocutaneous manifestations … however, patients who develop the disease later in life experience a far higher mortality rate. The mortality rate among those who develop ‘late-onset’ lupus can be as high as 50%.

Ethnicity also seems to play a role both in the likelihood of contracting lupus and the prognosis of patients. Caucasians are far less likely to develop lupus, and if they do are likely to suffer a milder variant, whereas Asian, African and Native Americans are more likely to develop more serious strains.

Survival rates after five years among Caucasians are typically around 94-96%. The only ethnic group with a higher documented survival rate are Koreans, with an average of 98%.

Treatments

As lupus is categorised as an autoimmune disease, most treatments involve the use of immunosuppressive drugs such as hydroxychloroquine and corticosteroids. In 2011, the first new drug in 50 years for the treatment of lupus, belimumab, was approved in the USA by the FDA.

In addition, patients can do a lot to manage their own condition. Rest is essential, and avoiding direct sunlight can help to reduce symptoms. It is important to make family and friends aware of the condition and its unpredictable nature – the nature of lupus can make patients susceptible to stress and depression.

Facts and Figures

● Forms of lupus affect around 5 million people worldwide
● Systemic lupus erythematosus account for around 70% of cases
● Around 5% of children born to people with lupus will develop the illness
● The ratio of women to men with SLE is around 7:1
● Around 0.041% of the UK population has some form of lupus

Conclusion

Whilst lupus is categorised as an ‘incurable’ condition, through a combination of medication and lifestyle it is possible to manage the symptoms of lupus. Likewise, as treatments advance and research continues, most lupus patients can now expect to achieve a normal lifespan.

My name is Sherry. This is the first time i have written down all of the events that led me to where I am now.

When I was around 13 I started having severe bladder and kidney infections. I went through testing and the drs never really had a solid answer why. When I was 17 I was hospitalized for 10 days for what the drs called a bad virus..i had a bladder, kidney, upper respiratory and blood infection. I was septic and resistent to antibiotics. This is when I felt my body change and go haywire. Let me add here that I was a very active teenager and even got into weight lifting in my late teens.

Then when I was 22 my mom died in a car accident and I unfortunately was following behind her in my car. It was horrible. While in therapy I learned how much anxiety I had.

I was in dental school studying to be a dental hygienist when I got pregnant with my first daughter. That’s when the hives started. Just one here and there nothing too serious. When my daughter was a couple months old we got custody of my 7 year old niece (my sister was a drug addict and passed away in 2009 from her disease). I stayed in school and had my second daughter. I was always tired and stressed but like all the stories I have read, passed it off as just being overwhelmed.

5 years after my mom died I lost my step father who raised me. I graduated from hygiene school and started to work full time, 16 hour days right away. I ended up having a severe gall bladder attack and then removal.

5 years after my step father died my father died. All my parents were under the age of 60 and i was 33 and parentless. I was getting sicker and sicker but blamed it on stress.

In 2007 and for close to a whole year I suffered with the worst hive episode!! I was covered and miserable. I went through all of the allergy testing because of course that’s what the drs said was wrong. The only thing that would calm them down was steroids.

Fast forward to 2010 and I was involved in a bad car accident and that sent me spiraling out of control. Severe pain, numbness, headaches, herniated disks etc. Finally in 2013 my spine dr sent me to a rheumatologist to get tested for fibromyalgia. I proceeded to tell him about my crazy medical past and he was intrigued. He sent me for the testing and long story short diagnosed me with fibro, SLE (lupus) and RA.

Last spring I got extremely sick again and was hospitalized for 12 days. That started with the flu but i also had an enlarged spleen and liver and was resistant to antibiotics. I also have an essential tremor that started while in the hospital. They also found bronchiactisis in both lungs. I was also diagnosed last fall with Sjrogens by my opthamalogist.

So here we are now. I have not practiced for a year. I am sick, nauseous, blurred vision, shakey, headaches, painful joints etc. My life has changed DRAMATICALLY over the last year. The emotional and financial toll has been so hard but I am so incredibly blessed with the most amazing husband, daughters, grandbabies and friends!!

I am thankful for this devastatingly beautiful life!! Thank you all for listening to my long story and for all of your support through these crazy years!!! ❤

My name is Nikki, since I was a little girl I have been sick, it mostly started when I was 4 years old. It took Doctors 7 years to figure out why I was always sick and hurting, especially if I had been exposed to the sun for too long.

A week after my 11th birthday I was diagnosed with Systemic Lupus, fibromyalgia, DJD and few others.

I have always been a positive, easy going person, even throughout all my hospital stays, fatigue and severe pain. Strength and laughter have gotten me through a lot. I have an incredible family that has been through it all with me.

I will be 32 years old in April and I am thankful everyday. My husband and sons are amazing all the time, even more so when I cannot walk or move due to the pain from these awful diseases. I stay educated when it comes to this horrible crap! I know my body and though it took me a very long time I listen to it when it says “hey lady enough is enough!” I am very stubborn and have been to hell and back multiple times because of the Lupus, especially.

Since I was a small child I can remember complaining of pains in my hips and legs, but I never let it stop me. I have been walking completely bone on bone with both of my hips since the age of 21 and I have no cartilage in my lower back. My husband has seen me in agony and says he doesn’t know how I get up and walk around like I don’t have a care in the world, happy as a lark not complaining, always smiling. Truth is I have trained myself to withstand my pain (which is never under a level 8) there is simply to much beauty in this life for me to miss it! I am proud of my strength and smile, I proud of those who try and understand as much as they can so I don’t feel so alone. I will walk and walk tall until I can’t anymore, and when that day comes, if it comes I will be wheeling myself around and still thanking God for all the beauty, laughter and love he has given me in my amazing life.

Stay positive, don’t close yourself off from the beauty, talk about what and how you are feeling and stay strong because you are incredible through it all!